Today marks three years without my stomach. On May 23rd, 2014, I said farewell to my stomach…never to be seen again.
What can I say about three years without my stomach. I’ve become happier, wiser, and more balanced. I put my priorities in things that matter in life – health, family and friends, and fun. Although this video looks pretty staged, I really like the message within and it sums up how my life changed after I dodged the stomach cancer bullet.
In terms of my weight, I have been sitting at 119-120lbs for the past month. I’m now 5lbs off my pre-surgery weight. My summer shorts from last year, don’t fit anymore. It’s weird to say that I’m actually happy about that. Who says that?!?!
My energy level continues to improve. The body is an amazing machine, if you push it a little bit at a time, it will adapt. Look at Marne and Steve who are completing feats that even those with a stomach don’t achieve. Amazing.
As for eating, I continue to push the envelope on what I can and cannot eat. Sometimes, you just want to eat something so you do it. You regret it later but the brain is a funny thing…give it enough time and it forgets the pain and you do it again.
The other day I watched the recorded, “Spotlight on Gastric Cancer” that was held in Seattle this year. My mom and I went to the first annual one in Philidelphia and hope to attend another one in the future as it is a great opportunity to network with those in the CDH1+ community.
During this presentation a question was asked, “What sorts of things do you wish you would have known about at the time, or what kinds of things have you learned since that you wish you had the knowledge about from the beginning?” It brought back a lot of early recovery memories and I thought it would be helpful to give my two cents.
> If at first you don’t succeed, try, try, again. Food is scary after you’ve had your stomach out. You know, even 3 years out…some foods are still scary. During my first year of recovery, I couldn’t tolerate sugar well. Now, I can eat it in moderation (i.e. a full cookie, a small piece of cake, small portions of freshly baked breads). I’ve had great success stories and some not so great ones.
> Make sure you are mentally strong and have a good support network. One thing about this CDH1+ mutation is that it really plays with your mind. It’s great to have people to bounce ideas off of. Having your stomach removed is like 10% of the recovery game, the other 90% is the mental component.
> if you don’t have anyone to speak with, you can reach out to the no stomach for cancer community, genetic counsellor, and social media
> Test your body. Push it a little and see how it responds. A little bit of pushing will go a long way.
> Go to a centre where they are well versed about CDH1+ as well as the prophylactic (curative) total gastrectomy. My genetic counsellor as well as my surgeon are all within the same hospital network. I continue to be followed annually.
> Probiotics. They have been a game changer for me over the past 6 months. I think I was lacking something and now I’m afraid to stop taking them. I’ve noticed a great gain in energy since I started. On the same note – take your vitamins. B12 deficiency is real and can have long term health consequences if your levels aren’t maintained. Also monitor your iron, calcium and vitamin D.
I’m sure there are a lot more other tips but I don’t want to drag this post on and on. The past year has been even better than the previous two years. I am excited to see what this next year will bring to the table!